On raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction.

Tuesday, January 19, 2016

Guest post: Growing Sideways

Back in October, I published a post called "From Raffi to the Wiggles: The power of sideways growth." In it, I referred to a piece written by autistic writer, speaker, and advocate Lydia Wayman. By describing her own developmental trajectory as "growing sideways," Lydia not only provided a valuable lens through which I could view Bud's development, but she also gave me language that helped me explain it to others.

Unfortunately, the link in my post is no longer working, and the site that hosted Lydia's original essay is not currently operational. Lydia has graciously allowed me to post a revised and updated version of it here. (Thank you, Lydia!) It appears in its entirety below.

Growing
Sideways

As a
young adult on the autism spectrum, I’m a living paradox.I may have a master’s degree and national
recognition for my autism advocacy, but, given the chance, I would choose any
Disney movie over boring, typical adult movies, and discussions of home
decorating and husbands and fancy dinners hold my interest for… not long enough
to even finish that sentence! While there may be other typical young adults out
there like me, I become a little more unique in that I love Hello Kitty, stickers,
coloring, and I refuse to carry a purse or wear make-up or high heels. I’m used
to the shock and “I thought you were in high school!” when someone finds out I
graduated over ten years ago.Developmental delay is a common term for children, but I don’t see a lot
out there about our timeline as adults. The difference is evident in skills and
independence and many other ways, but one issue gets to me the most. Autistic
people of all ages sometimes have interests that normally appeal to people much
younger than our chronological age, and the idea of “age-appropriate” is almost
enforced on us. I want to tell you that our interests may be different, but
that’s not a bad thing!

Typical
people follow a certain developmental trajectory.At six months, babies like pacifiers and
blankies.At six years, kids like dolls
and princesses.At sixteen, teens are
all about boys and cars, and at thirty-six, women are focused on husbands and
babies.So it shall be, they say. Says
who, I ask?

Autistic
people are not made to follow the same developmental trajectory as our typical
peers.It’s not that we follow a delayed
version of it—we’re not sucking on binkies when we’re sixteen or having babies
when we’re sixty-six.Instead, our
development follows an altogether different path.

I
remember middle school, when my friends became interested in boys and clothes
and pop stars.I’m very literal and
straightforward, so I was lost in the cattiness and drama, and yet, I
constantly remarked on the “immaturity” of my peers. I thought that maybe the
issue was not their lack of growing-up but rather mine.Now, I realize that they were growing up,
yes, but I was growing sideways, onto an altogether different path—an autistic
one.The older I got, the further my
path veered from the one everyone else seemed to be traveling.

By
sixteen, I had simply had it with the ways of high school hallways and decided
to graduate a year early and move on to college.But, when I got there, I didn’t fit in
socially and couldn’t manage my responsibilities.My executive functioning skills had not
caught up with my academic ability.My
social skills made for upsets with professors and other students, and that
upset me because I didn’t understand what was wrong.I tended to miss events and leave partway
through classes with total sensory overload, and when that happens, my
communication pretty much halts.

I did
graduate at 21 with a major in Elementary Education and emphasis in
Spanish.Following graduation, I had
services through the Adult Autism Waiver to help me with community inclusion,
cooking, cleaning, and organization. I felt constantly held up to a measuring
stick in which “normal” was at the top and I was always compared.It’s not fair to hold the autistic
22-year-old up to the neurotypical measuring stick for the same age.I have some gifts that far surpass what most
can do at my chronological age, but for some services and professionals, it
will always by my deficits that receive the focus.I will never, ever measure up.

I would
like to ask the state how they feel when I hold up their young-adult-selves to
what I’ve experienced and accomplished in 26 years and ask them how they feel
when they come up far short.I would
diagnose them as totally and utterly unexceptional.

There
have been times when my interests “grew down.”I like to stich, so for a while I liked to hand-stitch clothing for my
dolls. I never did play with them typically, even as a child, but what if I had…
at whatever age? I have adult friends
who play with their childhood toys as a way of working out situations and
understanding them better. A few of us like to have a figurine stashed in a
purse or pocket for something familiar on hand in case something unexpected
happens. I don’t understand why some people want to take away a harmless means of
experiencing and expanding our lives. It’s sad to think of autistic kids who
are told over and over that they have to hide their happy because someone else
might think it’s weird.

On a
very snowy, blustery day, I went to see Frozen with my mom.On the outside, I was an adult in a theater
playing a children’s movie. Did I look like I was putting up with it? That’s
what adults are supposed to do, right?But on the inside, I almost wanted to leave the theater, not because I
was bored but because some parts were playing out and putting words to things I
knew so deeply but didn’t know how to say. They were making other
movie-watchers feel for that character the way I felt all the time.

It's funny how some
distance,

makes everything seem small.

And the fears that once controlled
me, can't get to me at all

It's time to see what I can do,

to test the limits and break
through.

No right, no wrong, no rules for me.

I'm free!

I felt
intense empathy (hint, hint) for the princess who felt like a monster who must
isolate herself from her loved ones so as not to hurt them, but the song also
articulated the amazing freedom and power I feel over the fact that these
feelings are now buried in my past.The
power of the music and the stunning visual effects created a surge of emotion
within me.My mom could have said she
didn’t want to sit through a kid movie, and I probably wouldn’t have seen it at
all. But we both saw it, so I knew she followed the story and had the structure
in her mind to understand my experience. We typed back and forth about it,
which is always the best way for me to communicate, and I found words to help
her understand what I had felt in the years before I typed, and she was able to
give me advice and support about those things I’d been carrying most of my
life. I thought she didn’t care when things felt awful… I hadn’t realized she
didn’t even know.

It’s
been two years now, and I still send an email to my mom with my writing when I
realize she probably doesn’t know something…why I would put the cat on her when
she was sick (they made me feel better, and she likes cats too), why I hate
cash registers (don’t like beeping!), why I don’t like a certain department
store (the lights are too bright and make the floor shiny and hard to walk on
it)… sometimes it’s more serious, though. I was a verbal kid, but my mom has
said that my writing has felt like getting to know a different person.

But
what if I hadn’t seen Frozen?What if it
had been deemed inappropriate for my age?What if my mom hadn’t come and watched it with me?One of the most fundamental things in an
autistic life is that people misjudge you all the time… your abilities,
intentions, communication…

When
you tell an autistic adult that an interest is too childlike, that they need to
get back on the path where everyone else there age is walking… you take them
off the path of their history and their future, and you take away the chance
for that interest to help them process it all—to grow. Maybe I don’t grow up in
the same way, but I do a lot of growing sideways, and that’s how I learn to
cope and heal and find purpose.

Please
allow us the freedom to pursue our own developmental trajectories.The amazing ability and powerful insights
that come from this freedom might surprise you after all.

Lydia Wayman is a young adult autistic writer, speaker, and
advocate. She has a B.S. in Elementary Education and M.A. in English and
nonfiction writing. Her blog, Autistic Speaks, and other writing
supports parents and teachers by finding creative solutions to everyday
challenges for autistic kids. In spite of the grim predictions from autism
specialists about her adult life, this year, Lydia has earned her master's
degree, spoken at national autism conferences, and had her story featured in
the Wall Street Journal and on Good Morning America.